Living with Human T-lymphotropic virus 1 infectious disease
A viral infection that can lead to blood cancer, nerve disease, eye inflammation, or skin problems in some people.
Understanding Human T-lymphotropic virus 1 infectious disease
It is caused by the virus HTLV-1. Some infected people go on to develop a form of leukemia (blood cancer). Others develop a nerve condition of the spinal cord (myelopathy), eye inflammation (uveitis), skin inflammation (infectious dermatitis), or another inflammatory disorder.
Signs & symptoms
GARD doesn't list specific symptoms for this condition. Its summary describes:
- Leukemia (blood cancer)
- Spinal cord nerve disease (myelopathy)
- Eye inflammation (uveitis)
- Skin inflammation (dermatitis)
- Other inflammatory disorders
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It is caused by the HTLV-1 virus. GARD says it is spread by sexual contact, by contaminated needles used for intravenous drugs, and by breast feeding.
Also known as: htlv 1 infection; htlv i infection; human t-cell lymphotropic virus (htlv) 1 infection; human t-cell lymphotropic virus 1 infection; human t-lymphotropic virus 1 caused disease or disorder; human t-lymphotropic virus 1 disease or disorder
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Human T-lymphotropic virus 1 infectious disease.
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